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Cambridge Rare Disease Network - RAREfest | Film - Menkes Disease Finding Help and Hope 1

MENKES DISEASE _ FINDING HELP & HOPE

Synopsis: Academy Award nominee Mary McDonnell narrates this look at a rare fatal genetic disorder called Menkes Disease. It prevents boys from metabolizing copper. Boys who get treatment in the first ten days of life can have long and relatively normally lives. If the disease is not detected and treated that early their lives are much shorter and far from normal. This short documentary aims to explain some of the basics of the disease and treatment but also provide context with examples from three families across the globe showing that there is life after this terrible diagnosis. And that life is more joyful and hopeful than you might expect.

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